Wednesday, March 20, 2013

What is there to write? James has been in the ICU for almost six weeks. He has been re-listed for transplant at the highest possible priority ("rapidly deteriorating"). The wait feels endless. Each day in the ICU comes with further risks.

He is less comfortable with an increase in thick secretions and shortness of breath. The team is considering another bronchoscopy, but a decision will not be made without further discussion. James reluctantly agreed to an increase in his feeds (with a longer term goal of discontinuing the Total Parenteral Nutrition). We are afraid of the return of James' nausea and vomiting episodes, but TPN has high infection risks, and it is essential to preserve the function of his digestive system. It is one concern after another.

I feel as though I could sleep for weeks. Sleep is my only reprieve. I take the afternoons with the intention of being productive, but I find myself in bed. (Ophelia always graces me with her presence. She loves afternoon cuddles). I never imagined that this level of exhaustion was even possible. It is certainly worth every single day with James, but I look forward to a return to our lives separate from disease and illness.


  1. Adena and James, I think of you so often -- you are in my mind when I do all the various activities of daily life that I know are a dream for you right now.

  2. And I wanted to add -- I hope that soon these rather mundane tasks -- sweeping, dishes and such -- will be reality for you both, too.